Tuesday, August 19. 2014

I've been looking back over old posts on Instagram and Facebook and here on the blog, taking a moment while Ethan is asleep to see his journey unfold all at once instead of step by heart-wrenching step like it did in real time.

I'm kind of blown away.

From those first, horrible, dark days after his diagnosis to the beauty of his birth to this moment right here with him sleeping quietly all nestled up against me in the wrap, his short life has been a testament to God's faithfulness, the kind that you want to shout from the rooftops. The kind that's rooted in love and is going to last forever. That kind.

It makes sense to be grateful when faced with all this. I can't imagine any other response being more appropriate, and so I've been sharing all our joys with you, all the bright, shining moments that make up for all the sleepless nights, and so when I look at everything all at once, it looks pretty near perfect.

Except it's not.

Don't panic; nothing's wrong with Ethan. We just had a cardiology visit yesterday, and his heart is looking great. In fact, he's the only baby under his doctor's care who's had his type of surgery and isn't relying on diuretic medications afterwards, and he's consistently gaining more weight than they expect him to despite also being one of the only exclusively breastfed babies with his condition. So he's more than great.

But this whole newborn thing? It's not great. It's hard and tiring and grindingly relentless, and it feels like a betrayal to admit it out loud, but I'm not really a huge fan of it this time around. (Not really a huge fan is probably an understatement, but it's difficult enough to bring myself to type any of these words, so work with me here.)

Mothering a newborn is all-consuming. There are very few moments in the day when that baby isn't physically attached to you, especially if you scored one of the high-needs-and-also-breastfed ones. I mean, maybe you got lucky and your baby is laid back and sleeps anywhere and gives you long stretches to yourself at night. I had one of those with Zoe; she was cuddly and happy and would just sit in her bouncy seat and grin at us while we ate dinner. But I was still exhausted, because when that baby is born, all of a sudden you're not alone in your own head. From the moment they cut that cord, your world is taken over by a tiny little stranger who can't tell you what's wrong except by yelling at you. And even if that sort of thing only happens for a few minutes every day, it's still going to be hard, because you're spending the rest of the time anticipating the next need, an unconscious loop of hungrytiredgassywetdirtyhotcold? running on endless repeat in the back of your newly-crowded mind.

And then there are the needy ones. The ones who come out screaming and don't really stop or sleep unless you're holding them in a very specific way and rocking them just right and please no one better look at them funny or it all falls apart and you're back to square one. The ones who cry for no reason and every reason and there's absolutely no difference between one scream and the next, so if your mother's cousin's uncle doesn't stop telling you that you'll get to know what they want by their cry soon enough, you're probably going to throw him off a bridge. (The mother's cousin's uncle, not the baby.)

I got one of those this time. Don't believe me? Given those pictures up there, I can see why you wouldn't. As far as the internet is concerned, my kid is either happy and smiling or just hanging out looking around quietly; those are the moments I've shared with you because those are the moments I love, the ones I want to remember and the ones I hold on to during the rest of the time. The reality is something more like this, and this is one of the calmer fits; I almost never stop to take pictures of him crying because there's not really time for that when it takes everything I've got to get him to stop turning grey:

Except I don't really talk about it, because there's a voice in the back of my mind (when I can hear it over the crying) that tells me that I don't get to be tired. I don't get to be worn out or frustrated, and I sure as heck don't get to wish these hard hours away, because just a few months ago I was doing nothing but begging to have them at all.

I've decided that voice is a liar.

It doesn't matter how much you wanted your child, how long you tried to conceive or how desperately you prayed for his life to be spared: it's still okay to admit that you're not loving every second of the life that you'd give yours for in a single heartbeat.

There's a very real feeling out there (and by out there I mostly mean on BabyCenter, although I'm fairly confident that the mommy blog world as a whole doesn't do much to quell this particular notion) that the only appropriate response to having your life completely taken over by a tiny tyrant is nonstop happiness. Go spend a minute on Pinterest if you don't believe me.

It feels like it's not okay to complain about the aches and pains of pregnancy because there are so many women who would give anything to be able to conceive. Once your baby is born, you can't speak out the drudgery of the newborn days because some mamas had to let their babies go too soon. If your baby has special needs, there's always another one whose needs are more special than his, and on and on it goes. There will always be someone worse off than you, so you need to suck it up, paste on a smile and feel grateful every moment of every day.

Is that sounding ridiculous to anyone else, or is it just me? What's going on here? Are we afraid that we're going to be judged unworthy by all the other mothers if we're not dancing through life with a permanent smile on our faces?

I think it's time to admit that even the most perfect baby isn't actually perfect. The middle of the night, holding a screaming child and bouncing zombie-like on an exercise ball for the forty-fifth hour that day is a lonely place to be, and if there's one thing that the past years in West Africa taught me, it's that despite the fact that every mama's journey is her own, we aren't meant to walk this road alone.

So stop pretending it's all okay. Yes, I want to see the beautiful moments in your days. I want to laugh and rejoice with you when your kids say adorable things and finally start smiling and sleep for more than an hour at a time. But I also want to know about the rest of it, the parts that are hard for you, no matter what hard looks like in your house or how trivial it might seem to someone who's on a different path. I want to hear about the frustration and the exhaustion and the terrifying moments when you think you've made the biggest mistake of your life. And you need to speak up.

Because in those moments when you're feeling the weakest, I can guarantee you that there will be another mama out there, somewhere, who's having a strong day, one with plenty of love to spare just waiting to help lead you out of the darkness. But she won't know it's time to take your hand unless you tell her.

So tell her. Speak up. Stop walking and rocking and yoga ball bouncing alone. We're all in this together, every last ecstatic, exhausted, milk-stained mama in the world. And we could all use a hand sometimes.

Yes, yes, and yes! As the mother of a little one diagnosed with cancer when she was only 2yrs old- all these emotions live in my heart, too. As she has endured 7 surgeries, chemo, radiation, dozens of hospitalizations, hundreds of trips to the hospital, long term complications, at-home medical procedures, home health nursing, PTSD, etc. I have struggled to keep it together. Parenting is so hard and draining even on a good day, parenting a medically fragile child is like a sick, tortuous marathon. When your child hasn't slept in days, is recovering from surgery, is in pain, and sick from chemo it is so hard to deal with every tantrum with love and grace. I remember one particularly hard day when she really wanted to eat but everything tasted bad to her. As I made the twelfth plate of food she would be unable to swallow I couldn't help but sigh. As her big brown eyes looked up at me and said, "i promise I'll try to take a bite" a little piece of me died. It's just all too much at times. And as they get older and can plead and scream at you to stop letting the medical personnel hurt them as you hold them down or beg you not to hurt them again with daily medical procedures- another piece of your mama heart dies. It is one of the hardest jobs there is and I salute your honesty. Over the past 4yrs we have lost so many little cancer warriors that have fought along side her. After 32 children's funerals we will never be the same. As we try to cherish every moment as a gift, we have to be honest that the gift is not always happy, but it is still precious nonetheless. Through it all we keep our HOPE, cling to Jesus, support those around us, share our struggles honestly, and live with anticipation of eternity. Praying for moments of peace and rest, and for Christ's encouragement and strength for you!

When he gives "too" much of the bottom picture is when you need to give him away to a Grandma or other suitable lover for a short while so that you can recharge and enjoy Zoe for a bit. Then you will be ready to bounce on the ball again, or maybe get one of those top picture moments. Keeping all of you in prayer, and looking forward to more good news as the days go on! Love Nicky

Oh wow! Every..single..word in this entry hits home for me! Thank you for writing it! My heterotaxy warrior was born one month ago, and this is exactly where I am at in the emotional sense. This is our first baby, and I still don't have a flipping clue what I am doing! I wouldn't trade it for the world, but I would certainly give up one of my limbs just to be able to take home one of her nurses from the hospital to help me out a little! God bless you and your wonderful little munchkin.

Been there, done that with my son Alex. He was born with a blockage in his urinary tract & at 5 months he had a nephrouretorectomy. Most people tried to comfort me by saying people can live with one kidney; but what they didn't realize was his bladder was also damaged - that was the biggest concern. As a byproduct he also had idiopathic reactions to his meds which meant he never stayed in a deep sleep unless he was being rocked. So at night he would wake up an average of 5 times a night screaming & during the day I spent most of my time groggy, nursing, or rocking him for a nap (sometimes up to 3 hours). This lasted for three years & gradually improved by the time he was five. So I get the exhaustion. The good news is God can heal & at 18 years old Alex was released from his surgeons care.

I agree!! On every level. I know what it's like to be a zombie pacing through a dark house bouncing a screaming baby and bawling because no one told me there would be so much of this. Of feeling guilty for sneaking some food I so desperately wanted in a moment of "weakness" then having to face a child screaming inconsolably because of my milk. Of wearing a path in the grass from hours of pacing with a colicky baby because the crying seemed quieter outside. Of being afraid to ask for help because it meant presuming to inflict a screaming child on someone else. Finally, I remember the lovely women, including a certain Aunt Ali who just scooped up the screaming child and bounced away wjile having a real conversation with me. My children aren't special needs and it's hard enough at times. We're continuing to keep you guys in our prayers!

You just validated so many thoughts and feelings I've had in the past 4+ months. My daughter, born in April, has been a night and day difference from my two year old son. He was relaxed, easy going, and I could almost guarantee that I could get him to fall asleep any time by nursing. He would let my husband soothe him when he was upset, so it wasn't all on me. My daughter, my dear sweet, planned and anticipated lovely daughter is so much more high strung! She WON'T fall asleep nursing (unless its already the middle of the night and she is mostly asleep anyway) but getting her to fall and stay asleep day or night is just a terrible, screaming nightmare. And she WILL NOT let daddy soothe her, his trying just makes it worse. Some nights it takes hours. And hours. And hours. And I sometimes legitimately have things I need to get done without a baby attached to me, and would happily do those things once the kids are asleep at night. Or would love to even have an adult conversation with my husband. But when I can't get out of bed because it will poke the bear...errr, I mean, wake the baby...it's hard to keep it together. Mentally, emotionally, I am just drained. I love my babies more than life itself, but somethings gotta give (and it's looking like it will be my sanity). I've struggled with a lot of guilt the past few months because I feel like I shouldn't be thinking and feeling some of the things that I am. Thank you for the reminder that some days really do just suck, despite having so many things to be thankful for.
Ethan (and Zoe!) is beautiful, and you're doing a great job mama. Hang in there!

Ali, you are so right and so eloquent. Bless you for getting this out instead of just taking a well deserved nap. I know I'll never forget the long nights and endless challenges I had as well. I often thought, "well, this is what I deserve since we figured we knew better than God since we HAD to have the second child and rather than rest in His timing I went for the pharmaceutical assistance." These were the musings during my endless nights that revolved around the constant breast feedings where I had to coax out via the torture devise known as the pump since my 3 lb, 28 wk preemie never dev'd a suck reflex. So after slowly dribbling warmed breast milk via a large holed bottled and making sure his apnea monitor didn't screech because he was getting too much vagal stim rendering him blue and floppy. I'd then have to start pumping again after changing him and getting him back to sleep. Although the feedings started getting a bit further apart after a few months it didn't seem a whole lot better since I had to resume my residency a few weeks later and I looked like a raccoon all the tome because I was exhausted and i fell asleep with my face on the microscope nearly everyday.

So, 22 years later I remember it like yesterday but shake my head in amazement at how it was all worth it when we watched him graduate from college last May.

Tuck all of these memories away in your heart as you thank God for what He's got planned for all of you as you watch this adventure unfold.

My first child has been the toughest so far as newborns are concerned. She had her nights/days mixed up, wouldn't sleep for more than an hour or two, had the worst colic (5 or 6 hrs a night of straight rocking/bouncing/whatever I could think of before an hour or two of sleep.) She was a very alert baby and never wanted to miss anything - so I was one beyond tired new mama.

My second baby has been the opposite entirely. Super happy to cuddle, sleep, play. He's very relaxed. Although, now that he's almost two - its up for grabs if he's still the relaxed baby now! haha

Thankfully, I had lots of encouragement and support from my husband, friends, family and God himself. But there were days I truly struggled(tears, sobs, the whole gambit) and still do at times. I will say hang in there mamas and dads! God gave us these little lives to raise - so you know you're on the right path. Its not always easy or even slightly pretty but totally worth it!

Wow, Ali...I SOO needed to hear this today. I am fortunate and blessed to have a baby without any major health issues, and yet today I am still complaining about being exhausted and not knowing what to do when my 6-week old screams at me...God really led me to your page, yet again, in this moment...if only to remind me that I need to get out of my own head, and that sometimes, being a mommy sucks...and it's okay to admit it. You are so right that we moms are often made to feel like we can't talk about the hard parts, and the worst thing is that this feeling usually comes from other moms...(sometimes, it even comes from our OWN moms, the ones who should actually be encouraging us). Thanks for saying all of this...and I am rejoicing with you that your little warrior is doing so well!

Thank you for posting this. We didn't bring home our first baby, so when we got the chance at a second we were thrilled and ecstatic. And then reality set in. She didn't like to nap or sleep or nurse or swing in a swing or do tummy time or anything else, really. She cried. A lot. And she fought sleep. I dreaded bedtime because it meant 4-5 hours of rocking, nursing, bottle, begging, crying and screaming before we both finally exhausted ourselves. I couldn't figure out why my baby wasn't like other babies, why I was miserable when other moms were glowing with pride. It wasn't PPD. This mom crap is HARD. I made a humiliating admission to another mom the other day. As soon as I hit send in the chat I wanted to take the words back. I started backpedaling backpedaling backpedaling, and then she responded with the two sweetest words I've ever heard: "Me, too." I think if we moms said that to each other more often motherhood wouldn't feel so lonely. (PS - I'm an August 2012 BBC mom like you. I'm definitely one and done because of how hard dealing with a newborn is!)

Yes a million times! Abigail has always been my needy one, my never sleeping, tantrum throwing girl...from day 1. She is beautiful, smart, funny, and extremely wonderful girl but she really really really gets on my last nerve. We are on tantrum number 8 for the day and yes it could be molars, or ears but really it's just her personality and I thought by 2 it'd be better but nope she still never sleeps at the appropriate times, still feels hellbent to only let me hold her when she wants, still gets bent out of shap if you look at her funny but I too try to just hold onto her sweet personality that's hiding deep down inside her like a special pearl that's still in the works. She's beautifully and wonderfully made and yet I still hide in the bathroom, or take extra long showers when hubby is home, I take an extra lap around the campus when he's watching her because if I don't I won't be able to handle the unending neediness!! And that's okay!!

It took me three years to get pregnant with my first one. I felt the same way after she was born. And I had such guilt because I felt that way. I had a huge cry about it one night with my husband. We decided I wasn't crazy, I wasn't depressed and most importantly I was normal. The words you have written Re the much more eloquent version of what I tell pregnant friends. No one told me I might feel that way and I wish they had. It would have saved me from a night of ugly crying. Now... I am pregnant with twins. I am scared of the newborn period. Shew..

Hi Ali,
I don't know what made me come looking for you tonight. Something about 5 Minute Friday triggered in my memory and I wondered how you were doing. (I'm glad your blog is so easily searchable by "mercy ships ali"!) Obviously it's been well over a year since I stopped by here as I didn't know anything about Ethan.
What a precious boy! I will have to come back tomorrow when I'm not so tired (hello midnight!) and read more of the story.
But thank you for sharing. We are so all in it together and the more we share the less alone we feel. Prayers for you tonight.

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welcome!

I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.

In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)

ali (that's me!)

phil

zoe rae

ethan vikash

ethan's story

Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.

Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.